A Carer’s Experience
Recently I became involved in a small Steering Group organising an event for carers of people living with dementia in East Lothian. Our event was held in May this year with about 30 delegates attending. The delegates
We’re all unpaid carers and those of us on the Steering group are unpaid carers. This gave us a different perspective when organising the event.
We invited 2 speakers, held 2 discussion groups, had a panel taking questions and ended with a fabulous prize draw whereby everyone went home with a gift very kindly donated by local business. In addition there were several stands with lots of information for carers about a wide variety of issues which carers might want to access. We also produced a generic directory and a local directory.
The theme was about the new Carer’s Act which came into place on 1 April 2018. As each council prepares it’s draft strategy this was also an opportunity to feedback to ELC how best to meet carer’s needs over a wide spectrum of individual situations and dementias and to know that others share our dilemma. It was an opportunity to ask questions on one hand and listen to people’s needs and how best to support those needs on the other hand.
My husband, currently 79, was diagnosed with dementia in 2015. CT and SPECT scans along with in-depth psychological assessment processes seem to indicate a mixed dementia. He now takes Aricept for the Alzheimer element which has made a difference to his wellbeing.
I have found the whole process difficult in part with the not knowing and also because he would deny there was anything amiss even although he instigated the investigative process because of spatial awareness issues. He immediately stopped driving. Also apart from out immediate family he did not want to treated differently and would not tell anyone. Of course I found that hard and eventually began to share our situation with close friends.
At the time of post diagnostic support we were given lots of paperwork, lists of agencies and websites. I read some information but became overwhelmed by it all and decided to simply live this new experience. Since then I have become more familiar with the hows and wherefores to access help. I should mention that the Dementia Link Workers visited us reasonably regularly and it was great to have someone to talk to yet we were always together. This was hard when I would have welcomed someone for me.
Our event was aimed at the “ME”!
Frontal lobe dementia involves many things including personality changes, loss of a regulatory mechanism as well as spatial awareness. The person seems to be unaware of change and therefore can’t acknowledge difficulties of their carer. My husband gets frustrated and so do I.
The progression of disease is slow fortunately and sometimes I know that it’s my not being able to keep quiet which creates tension.
We have 4 sons. 40 years ago our 3rd son Alastair died, aged 6,from a rare childhood cancer. As I’ve reflected on current caring needs, I realised that I was returning in my mind to caring for my son. He was unwell for 6 months after diagnosis and time and family life was focussed on the journey of his last 6 months. Our older 2 sons needed care too and we had lots of help. Much has changed in 40 years.
Each of us including our 4th son has lived a grief journey and the impact on our relationships within the family. I speak of this because of the impact on my marital relationship. Individual journeys can be so different and it’s not always easy to respect difference. Because of my own experiences I know I can stand up for myself although many times I’m wracked by self-doubt.
Now we’re 40 years hence, to me the most important thing is people, listening and sharing. Our discussion groups at our event began that process and I felt on reflection that it could have been helpful to have more time in those groups and perhaps been able to offer some kind of follow up arrangement – perhaps smaller groups considering location and some kind of buddy system for carers growing out of the local support groups and excellent work of Dementia Friendly. I have many times of uncertainty and of course it can be very hard to pick up the phone and ask for help. We want our loved ones to have as good a quality of life as possible. What about us?
Our sons and their families are really supportive in keeping in touch yet their work and marriages have taken them to the south of England and abroad. We are blessed with good friends and a wonderful environment in which to live. The constancy and ever changing tideline helps shift perspective and we both benefit from that in order to begin accepting the process of change and renewal. We have made new friends. I am fortunate to enjoy some “me time”. Whatever the future holds, I want to appreciate “now” and all that brings. Living with someone with dementia seems quite scary to me as I’m worried I can’t do this, and be fair to my husband. It’s an emotional, draining roller-coaster. Strength and courage are what I ask for.